Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “Covid19”

After You’re Gone

Over the years, writing “Paul’s Heart” has been rewarding, therapeutic, sometimes entertaining, and occasionally, a wonderful trip down memory lane. Sometimes, it can be heartbreaking, provocative, and challenging. If there is one thing that can frustrate those in my life, I am consistently open, candid, and at times, brutally honest in my posts. I am this way for one reason. While there is much to be celebrated being a long time cancer survivor of over 31 years, and I consider myself to be a great Dad to two of the most wonderful daughters a father could ever ask for, I will never discover a cure for a disease. I can never donate blood or organs because of my health history. Wanting to have a feeling of worth, more than just that of a father, I feel that if any of my experiences in my life that I share, can help even just one person, then my post, my openness, was worth it. Whether someone feels encouraged, inspired, moved to do something in life, for the better, from my examples in cancer survivorship, patient advocacy, adoption, divorce and single parenting, if my words help just one person, then it has been worth it to me.

In all my of years writing, I cannot recall ever mentioning that I had a younger sibling. There are reasons for that, that I will not get into for the purpose of this post, because it is not relevant. To keep it simple, we had been estranged. And yes, that last sentence is past tense. My sister died just over a month ago, from Covid19. Again, the purpose of this post is not for sympathy. I do not ask for any. But there is someone hurting right now, that does impact me, my mother. As a reader of “Paul’s Heart,” you know I have a lot of extreme health issues. My sister should have easily outlived me. However, she made a decision, and was wrong.

So as I often do, thoughts filled my head, and with nowhere else to go with those thoughts, they went to paper, raw, nonstop. My sister and I had major disagreements that we were willing to take with us to our graves. Now that is guaranteed. But there was still something needed to be said.

It is my hope, that if you are one of the many, still unvaccinated, or still fighting against ending this health tragedy, that you can see, your thoughts and decisions that you are making in not getting vaccinated against Covid19, affect more than just you. You cannot say “the media” this or “that stuff does not happen” or ” it was something else” just because you do not like a resource. This actually happened. My sister died from Covid19 because she refused to get vaccinated for a number of reasons, all of them wrong. She did not need to die. This is the truth. If you truly feel, that the risk of a potential minor side effect if it happened at all, is worse than dying, because that is what you have been led to believe, read this story. Because in the end, it is not. Dying from something preventable does not just affect you.

After You’re Gone

“First, I want to say, I understand why you believed what you did.  I also feel bad that you believed what you did.  But I get why.

Second, there is a part of me that is even proud, that you stood by your decisions, all the way to your last breath.  Nothing was going to break that rock.

So, here we are.  Now you are gone, dead.  But damnit!  You stood your ground!

And what did you get for the ultimate commitment?  Anything from the President you supported, who claimed Covid19 was a hoax in the beginning?  But even after acknowledging it was real, you still did not take Covid19 seriously.  Anything from the anti-vaxxer crowd and conspiracy theorists who pushed false treatments and their reasons not to take the vaccine, whose efforts you bought, hook, line, and sinker?  Will you be getting a medal for your “patriotism” for the stance as some would refer to you, a “patriot”, for the position you took?  Ah, how about cash?  Any reward for the ultimate sacrifice you paid for with your stance?  No?

Well, here is what you do have.

A spouse who still does not believe in getting the vaccine, even after watching you die.

Your children, though adults, will live without their mother for so many years, that you were supposed to see of their future.

Your own mother, now having to bury her child, something no parent should ever have to do.

This is not just about your decision.   It is also about risk, for others in your life.

There will likely be a funeral, during a time when Covid19 is still a huge risk.  This type of gathering is referred to as a super-spreader event.  It will be attended by those who have taken the same position as you, but also others who have believed in science and what is necessary to protect their lives.  Attending your funeral will still put them at risk, but they want to be there out of respect for surviving members of the family.  I guess you had not thought about that.

I bet you did not think about all the hospital staff that would have to take care of you and not only watch as you die, or like on your birthday, make sure you would be able to hear voices sing happy birthday from your family through a phone.  That is, if you were able to hear it.  Oh yeah, and then, the time when the ones who fought to save your life, have to tell your family that you are gone, and yet, another death they have had to witness that did not have to happen.

I am pretty sure you did not think everything through, that getting vaccinated to protect yourself against Covid19 was not just about you, but the countless lives that would be affected by you not getting the vaccine.  Now you know.  But it is too late, you are gone now.”

A Fate I Never Want To Face

This is Travis Campbell of Virginia. He is 43 years old. And yes, he is a Covid19 patient. He is also someone who has been resistant to taking the Covid19 virus seriously, including getting vaccinated. He is publicizing his journey on social media. In his words, he “messed up” in not getting the vaccine. His current status, having graduated downward in his condition, has him now in the ICU. In his videos, you can hear him struggling to breathe.

This is not the part of his story that gets me. I am tired, after a year and a half of trying to convince people I know, who either deny the reality of the situation or have gone full throttle conspiracy in getting through this pandemic. My friends who believe opposite what I do in regard to Covid19, know that I will respect their decision, no matter how wrong I feel they may be. Notice, I am not saying they are wrong, but rather, I feel they are wrong. And that is different. Because I really think, that if they took a step away from the resources they use to make their determination, and look at the science and facts, from reliable sources, like their doctors, just as I do, they would definitely at the least, have some doubt about their current stance.

But emotionally, I just cannot offer any sorrow at this point for anyone making the choices against prevention, against mitigation, against common sense, only to get smacked in the face with reality. I have several friends who work in health care, including a long term Hodgkin’s survivor who is “forced” to work, taking care of Covid19 patients in spite of her vulnerabilities. And I find it even more offensive than earlier, that with at least the option of being vaccinated, the majority of patients being seen, are not being vaccinated. My only thoughts and prayers are not for those patients, but for my friends and other front line workers and their families who have not asked as part of their career choice, to take care of people who blatantly have such disregard for public welfare and saftey.

In any case, I do not wish ill on anyone, and I do hope that Mr. Campbell can recover. Though his last update yesterday, does not offer that promise. He has been switched from different levels of breathing assistance, and moved into the ICU for his care. He stated in yesterday’s update, that he now has blood clots as well as a crystalizing in his lungs, both common side effects of the virus, known from the beginning, and for me, being vulnerable, all I needed to know, to know that I could not afford to contract Covid19, confirmed by my cardiologist who stated very plainly, “if you get Covid19, with your heart and lungs the way they are, you will die.” That is not Facebook or any news outlet, that is my personal doctor who knows my health. Of course I take this seriously. But you do not have to have my vulnerabilities to know that blood clots and this crystalizing to know they are bad for even “healthy” people.

It is the next part of my post, that is what bothers me the most, and honestly, should have been a no-brainer for Campbell, long ago. He is now likely heading to the next level of care, and possibly the final level of care, being put on a respirator. And as most know, being put on a respirator for Covid19 is a bad prospect, with fairly good odds of never being able to come off of it. Death. Even the possibility of death while being on the respirator is not enough to convince people to do what they can to avoid Covid19. Ask any of us, who have ever been put on a respirator for any of our non-Covid19 procedures (myself at least six times that I can remember), and how unpleasant the process of being intubated is, should be enough to turn you back into giving a shit. But not Campbell.

It is his last words from yesterday, that have actually broken through my shell, and really have me shaking my head with his situation. He has two young children. As do I. As he prepares to be placed onto a respirator, he held a conversation with his son, 14 years of age, that if by some chance, he does not survive, he asks his son, that when the time comes that his sister gets married, he would “give his sister away” in his place.

When I watched this, I lost it. My friends and family know how much they all mean to me, and will not take offense to this comment, but my daughters are my world. Anything and everything I do is for them. From the very first health crisis I faced, my emergency open heart surgery, through the too-numerous-to-count more events, I have fought through everything, for them, so that they would never have to experience the loss of their Dad, at least in their youth, like several of their friends.

My life almost ended in 2008 with a widow maker heart attack, were it not for the emergency surgery. And then I found out, why that condition happened, and all the other health issues I deal with today, late developing side effects from my treatments for Hodgkin’s Lymphoma, high doses of radiation, and toxic chemotherapy. Yes, I have survived 31 years because of what was done to me, and it has come at a cost. But, my doctors have all told me, they will do what they can, to at least keep the pace of the development of these issues as slow as they can, since it cannot be reversed. And we all have the same goals: to see both my daughters graduate and possibly go to college, perhaps get married, and even give me grandchildren. I am close to that first milestone with my oldest one year away from graduation. And I am doing all that I can to get to all of these milestones.

That is what finally broke through me about Campbell’s situation. I never want anyone else to need to walk my daughters down a wedding aisle. And that is why, knowing what I know about my health, and knowing what I have been told by those closest to me that I trust the most, my doctors, I am doing all that I can to avoid contracting Covid19. Is it a guarantee? Hardly since I live in Florida and the majority of people are still fighting the obvious, and a governor who refuses to encourage any kind of precautions. But I am doing all that I can. And for those crying “my freedom” or as I call it, free-dumb, I am still “free.” Like all the other illnesses that I have gotten through in my survivorship, it is because I listen to those that know, my doctors, that I am living my life, one day at a time, doing all the things I want and need to do.

As a father, I can only hope that Campbell can recover so that he can walk his daughter down her wedding aisle. I could never imagine anyone else doing it for my daughters.

Cutting Corners And Fast Tracks

When you think of the phrase “cut corners,” you will normally think of ways to either save time or save money.  And depending on what you are trying to to “cut corners”‘ on, it can be either a good thing, or a bad thing, especially if someone gets caught.  In meeting a household budget, one might decide to do one less night out, or perhaps buy one less treat on the trip to the grocery store.  Driving in rush hour traffic, or late for an appointment, it only makes sense to make a different turn than originally planned, or worse, against the recommendations of your GPS, to either save time or distance.

We are an society that loves instant gratification.  We hate to wait for things.  Disney was one of the first pioneers to come up with an organized method to speed things up, or at least make you think you have saved time, the “Fast Pass.”  Think back to elementary school, while waiting in line, and then having to go to the bathroom, we would ask the person either behind us or in front of us, to “hold my spot.”  That is the Disney “Fast Pass.”  You check in for a ride that traditionally has a long line, like hours long, and it gives you a time to come back later, bypassing the line, allowing you to enjoy other attractions at the park.  And as long as you do not mind just walking to all of the attractions you would like to ride, check-in, then return later in the day, this will work out for you.  When it is your turn, you get to go right to the front of the line, without having to wait in a line, like the rest of the other parkgoers.

There are times when cutting corners are a good thing, and when saving time is a benefit.   To expect these attitudes however to apply in all parts of life, is not only unreasonable, but dangerous.

I used to work in an industry  that is heavily regulated.  And for good reason.  It affected people’s lives.  On a daily basis, corners would be cut from allowing proper time to complete a task, training a co-worker properly, to diluting chemicals.  Now probably in many cases, it may not have been a big deal.  In others, contamination risks, more importantly, potency and accuracy may make a difference.

We, my co-workers, were expected to do whatever we needed to do, to complete our daily work assignments.  Often times that meant cutting corners in time and materials.  At times, management even forced these situations when it would come to “time points,” to avoid paying overtime, shifting time points into regular working hours.  Now for those who do not understand that importance, think about a dosage and how often you take a medicine.  How do you think, those intervals came about?  How would you feel if you found out, that occasionally the testing behind those products was not spot on, just for convenience?  You can now see how cutting corners can easily be a bad thing as well.

I was notorious for being a pain-in-the-ass, for refusing to cut corners.  Besides the fact that I did not think it was the right thing to do, my signature went on every document of every task that I completed, and I knew that if something went wrong, it would get thrown back at me.  And I could plead all that I wanted, “management made me do it.”  Who would inspectors take the word of more, a supervisor or a peon employee?  Deep inside, I knew I was doing the right thing, although my peers and management felt differently.  I often found myself not getting certain assignments because daily, it was all about quantity of work getting done, not quality.  But my acknowledgement would come at inspection times.

When inspectors would come onto plant site, that is when I got tasks that I knew were important to the company, and that they were needed to be done correctly and thoroughly.  And with the majority of my other co-workers routinely doing this via “short-cut”, they may not have remembered all the things that needed to be done, or correctly.  All you have to do is look at your local food inspection reports.  If you do not want bad attention, you put your best people on to make up, or cover up what you have been doing.

For me, when I worked, there were no corners to cut.  I was not interested in getting things done the fastest.  And I am thankful that for every nurse, doctor, and tech that has taken care of me, especially over the last three decades, hopefully were not corner-cutters as well.  I count on them to have all the skills necessary to treat the needs that I have.

Today, we are dealing with our worst health crisis, at least in my life-time, and I want to say that I hope that I never see another one.  Over the last fifteen or so years, viruses and outbreaks have become very common.  And we have always been able to respond quickly and with hopefully the least amount of casualties.  But this time is different, there is no cure, there is no vaccine.  We are simply relying on people to willingly do the right thing.  And it is not much that is being asked.  Wash our hands, and social distance, six feet apart.

But, just as co-workers can interfere with a process of prevention or development, we in the public sector are no different.  We have the right people in place for the most part, the scientists doing the research, giving the recommendations.  And the majority of the people are doing their part listening to, and following the recommendations.  Then there are those who feel that their individual freedoms are being challenged, in spite of it being for their safety, for our safety, they will not be told what to do.  Instead, they also challenge the powers to be, to cut corners, and to go around protocols to find treatments and vaccines faster, so that they do not have to be inconvenienced, or lose their freedom.

It is only a select amount of people who feel this freedom is being violated.  And the scientists cannot allow their concentrations to be distracted or diverted from their cause, finding a cure and a vaccine.

We have tons of medicines available to us.  And it is only natural to find multiple uses for them.  In fact, Big Pharm has found these new uses as a way to hang on to a patent to maintain their profit margin.  By the same token, accidental discoveries have also allowed doctors to make “off label” recommendations to help patients be able to afford medicines that might just help their malady.  One example that has led to other uses, sleep drugs being discovered also to benefit for use as a diet drug.

Or one that I personally became aware of years ago, the allergy drug, Claritin.  Only a few years ago did I learn that this drug had the ability to treat certain bone pain associated with neupogen shots for those going through cancer.  These particular shots would accelerate white cell growth, which of course occur in the bones, causing the familiar “growing pains” some of us may have experienced in our youth.  The thing is, this pain does not respond to normal pain meds, nor does it seem to respond to other antihistamines.  A regimen now is often recommended, off-label, of Claritin for this bone pain when going through chemotherapy.

So, why not just have the FDA approve Claritin for that purpose.  Because, we have a process.  It has not been scientifically and officially gone through the processes to be approved.  The cynic in me also tells me that there is not likely to be any kind of official designation, because there will not be any real profit for an over-the-counter medicine.  But, doctors who are aware of this option, will definitely recommend it, and unofficially, I can tell you, out of every cancer patient that has ever mentioned this to me, including my late father, Claritin has done just that.

The frustrating thing for everyone then, during this pandemic, is that we thought there might just have been a drug that is currently used for another purpose, that might help treat Covid19.  Just like Claritin, there was success with some patients that this drug had not just shown promise, but gave hope.  But unlike Claritin, the discovery of this particular drug, used for Lupus and rheumatoid arthritis, and the deadliness of the virus, caused an unprecedented hoarding of that drug, taking away availability to the patients that need that proven treatment for their quality of life.

Like I said, there is not a lot of time with this virus to find a cure or vaccine.  It was only natural to want to push this discovery, but it still needed to be done.  To determine if this drug could actually treat and cure Covid19, it would need to be studied just like every other medication.  But that will take time.

Sadly, because that time has not been taken, scientists have now discovered that the drug, taken in higher dosages, can be fatal, caused by cardiac issues.  These are issues that come up in studies.  There is a reason that we cannot just throw a pile of shit at a wall and see what sticks and say, “THAT’S IT!”.  There are no corners that can be cut.  There is not fast way to get there.

All we can do at this time, while we wait, is follow the advice that we have been given, because for the most part, those of us that have done our part, the statistics are nowhere near what they could have been.  But imagine if everyone had followed the advice instead of feeling their freedoms being threatened.  We could have been done with it by now.

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